Marfan Syndrome patient gives back by volunteering

Cardiovascular Health Improvement Project is dedicated to the study of cardiovascular disease

Angela Rosinski was diagnosed with Marfan Syndrome after experiencing an aortic dissection as well as other aortic complications. Her condition and subsequent treatment at the University of Michigan Frankel Cardiovascular Center led her to a decision to give back to U-M by becoming involved in the Cardiovascular Health Improvement Project. The program recruits volunteers to better understand cardiovascular disease and expand treatment for patients.

Angela shares her story:

I was perfectly healthy my entire life — until four years ago, on December 23, when I began to feel that something was very wrong with me. At first, I suspected indigestion, but the feeling continued. After lying down for a while with no results, I called my mom, who could hear the fear in my voice.

I had my five-year-old daughter and her cousin with me and had just put them to bed. Fortunately for me, they both came into the living room just as I began to feel as though I was suffocating. My daughter called 911, as did my mother. I was so relieved when I saw the lights from the ambulance in front of my house.

Although I was first diagnosed with a severe anxiety attack, my mom’s insistence on a CT scan paid off — and probably saved my life.

My mom had experienced a small dissection in her aorta 10 years prior and she had the feeling I was experiencing something similar. She was right. The CT scan revealed an aortic dissection. I was rushed to the University of Michigan where Dr. Himanshu Patel was waiting to perform what turned out to be a 16-hour surgery to repair my aorta, which had dissected all the way to my groin.

A condition known as Marfan Syndrome caused the aortic dissection. Marfan Syndrome is a genetic disorder that affects the body’s connective tissue, which lends strength to the body’s organs and tissues. Many Marfan Syndrome patients have physical characteristics, including being unusually tall with long limbs, but I wasn’t even aware I had the syndrome until this incident. Afterward, when I was tested, along with my mom and others in my family, three of us were found to have Marfan Syndrome, but none of us had physical characteristics.

I recovered from my surgery, but experienced other health scares that have made me thankful to be alive today.

Since my life-threatening experiences, and knowing I will likely face another aortic-related surgery in the near future, I wanted to give something back in the hopes of helping other patients who experience similar health challenges. I know for certain that I never want to go through what I experienced four years go at the age of 32. This is the reason I’m involved in the Cardiovascular Health Improvement Project.

So far, my participation in the program has involved creating my family tree, with a thorough background of my family and the health issues they’ve experienced. I’ve also donated blood, which is kept in a blood bank for future research. I’m happy to do what I can to help physicians and researchers discover more about Marfan Syndrome.

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